Page 3969 - Week 10 - Thursday, 20 September 2018
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NF affects one in 2,500 people. It is as common as cystic fibrosis, it is as common as muscular dystrophy, and it is as common as Huntington’s. There are no geographic, racial or ethnic preferences. Males and females are affected equally. But very few people know about NF or understand it. As a result funding is genuinely a struggle—funding to support the families to overcome the challenges of living with and managing NF.
By now you have probably already gathered that Libby Elliott is pretty special. But she is a special person in a very special family. To help raise awareness herself, Libby, who is still in primary school, agreed this year to become the face of the NF campaign. In a video explaining what NF is, she said:
I don’t really have that much friends at school, because I don’t look like a normal kid so they don’t actually think that I’m a normal kid.
On 9 September the Children’s Tumour Foundation ran one of its two yearly fundraisers: the NF hero march, a five-kilometre walk around Lake Ginninderra, supported by the Lighthouse pub and run by Belconnen local Carey Russell. To raise money, Libby’s dad, Cam Elliott, agreed to carry one kilogram for every $100 he raised. Cam actually raised over $11,000—now $12,000—and had to enlist a friend to help him carry the other 40 kilograms. Yes, that is right, Madam Speaker, Cam carried 70 kilograms for five kilometres.
It was an honour to walk with Cam and the other marchers, many with NF themselves. On the day all of us were wearing capes like heroes, and we were joined by Cam’s other daughter, Katy, who led the way on the scooter. I did not help Cam out much, but I did ensure he did not end up accidentally adding another two kilometres to the walk, which seemed likely for a few scary moments there.
Even more impressive is that Libby had just had surgery a few weeks ago for an egg-sized tumour on her spine, and she completed the same distance herself—not carrying 70 kilos, mind you—a short time after Cam finished, and she completed that with her mother, Jen.
Cam’s contribution to the cause is nothing short of incredible and follows a long history of contributing to the cause. The foundation had a humble goal of raising funds of just $90,000, but it fell short of that, with around $60,000 raised. When we consider that other foundations—very worthy foundations—are in some cases raising such extraordinary amounts of money—millions and millions of dollars each year—and given the huge impact of NF on those with it and their families, I do think we should be exploring more, and I will be doing my part, to ensure it continues to get the attention it deserves.
The next fundraiser is the cupid’s undie run in February, and Cam has many creative ways of raising funds for that one. I encourage people to look online at the everydayhero account/NF2 for Cam’s fundraiser. I encourage all members in this place to give consideration to this foundation in the future and for people to think about it around tax time, to think about the support it provides families and how we
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